My son Daniel passed away from Melanoma metastases’ on the 1st August 2011. He was 25 years old.

A mother’s role is to love, protect and nurture, guide and support her children. But number one is to protect. This is instinctive, protection of the species. Have you ever tried to get close to new born calf, the mother cow will have you air born before you get within a metre.

In humans it is part of the intrinsic bond of love born at the first knowledge of pregnancy, there is a life within you, a bond that takes precedence over anything else, for the rest of your life.

From the time of conception we nurture and protect our children; during pregnancy I wouldn’t eat certain foods, drink alcohol, take certain medications or anything that would harm that precious unborn child. When they are born, every second of every day for the rest of a mother’s life is taken up with protecting, nurturing guiding, supporting. Are they too hot too cold, is that fever something serious, are they putting on enough weight, is the house safe, will they fall down the stairs, can they get out onto the road, are those the best shoes for their feet, don’t put knives into toasters, will that school nurture and support them, bring out their best. Stranger danger, swimming lessons, talks about the harmful effect of street drugs, unprotected sex, walking down an unlit street at night. And we do this, because the thought of living life without them is so unbearably painful.

Daniel and I were very close. He was the last of our three children to leave home. It was February 2010 when he moved in with his sister in her flat in Melbourne. I missed him, empty nesters. But his twin brother and our new daughter in law were due to arrive back in Australia after three years in China, so my husband and I were excitedly rearranging rooms in the house for their arrival in June.

Helen and Daniel Roper

I noticed Daniel was losing weight and put it down to not having home cooked meals so I would feed him up when he was home and send him off with supplies of frozen home cooked meals, easy to reheat with lots of protein and fresh vegetables home baked biscuits and cakes. We spoke and texted a few times each week but as he had started back at university to do a second degree and was working and enjoying a happy social life, I only saw him every couple of weeks. The weight loss continued and I worried but he was happy and seemed well, enjoying his new freedom of living away from home.

When Daniel developed back pain late2010, about the same time his sister moved to America on a scholarship, we put it down to a strained muscle from carrying his bag of large university books. The pain became severe over the next few months and his new GP sent him for a scan as it was in the vicinity of the scare on his back where he had a melanoma removed seven years earlier.

It was the mid December 2010. The GP called us both into his office to review the scan results. A tumour in his spine was causing the pain. A full body scan later that day revealed a more horrendous picture. Part of me had known something was wrong but the protective mother side couldn’t let this happen or comprehend how it could happen. Every year, for seven years we religiously went to the dermatologist for his annual post melanoma removal check-up. Every new lump, bump, mole was reviewed, biopsied, scrutinised. How could this happen. As a nurse with 30 years’ experience, it was unforgiveable that I could miss what was happening in front of my eyes to my own son.

Two days later we were at Peter Mac talking to the palliative care team, counselling, discussing pain management options with Professor Grant McArthur who gave us our greatest gift … hope, not false hope, just something to cling onto to get us to the other side of that week … drug trials. Without that we would have been swept down the raging river of despair. It was Christmas Eve 2010.

Jan 2011 Daniel was transferred to the Austin Hospital to take a spot on Professor Jonathan Cebon’s BRAF/MEC trial, just words and letters to us back then.Unaware of the extraordinary effort Prof Cebon was putting into getting Daniel onto that trial, a trial that hadn’t actually started in Australia at that point; we waited, Daniel’s condition deteriorated. As a mother I should be protecting him, stopping this. I tried to gently prepare him and my family for what was to come. We were told he wouldn’t see the weekend unless he could start on the drug trial.

Monday, 28th Feb 2011 the new drugs arrived, but he was dying. His sister was to arrive home from the USA on Wednesday and I feared she would not see him before he died.

Friday 4th of March 2011, Daniel walked, yes walked somewhat unsteadily but very determinably, out of the Austin Hospital, it was his sister’s birthday, the best birthday gift she had ever had.

I will not try to describe how these drugs work; that is better left to the experts. The BRAF/MEC drugs gave Daniel another five months with us. It was not an easy five months due to the side effects of the drugs, but he had a few weeks of being ok, enjoying life. He knew, as we did that this was borrowed time and we had to make the most of each precious moment.

We were and still are so immensely grateful to Prof Jonathan Cebon and his team at the Austin for being so honest with us. We didn’t need false hope, we needed truth. Truth, no matter how painful when received, allowed us to plan and try to accept the future. It gave Daniel time to catch up with his friends, time to plan his funeral, what type of music and wine he wanted at his wake, how and where he wanted to be buried. By far the most horrendous conversation I have ever had in my life was bringing up the subject of funerals and cemeteries with my child; walking through cemeteries with my husband trying to find a place to lay our son to rest, taking him home photos to look at so he could give his opinion on a particular spot.

The seven months from the time Daniel was diagnosed til he passed away were for me, his mother, like being paralysed with a drug. I could see and hear everything that was happening, but could do nothing to help my son. When I left him my chest would physically hurt, my heart was breaking, and I sometimes wondered if perhaps I would die before he did. How could something so unbearably painful not actually kill me?

Daniel Roper

Watching my husband and our other children suffer so unbearably, I am the nurturer, and I was failing to ease the pain of the ones I love so dearly. Their agony was my agony. Sleep gave no reprieve, even with sleeping pills I would be swept away to dark unfamiliar places with my baby son in my arms trying to protect him from horrendous happenings or to get him help. There were some mornings I would wake and wondered which was worse, the real nightmare we were living or the ones that consumed me at night. But the worst was yet to come, learning to live without him.

We are forever indebted to the research team at the Austin. Prof Jonathan Cebon and his team are so dedicated and passionate about the work they are doing and so caring about the people and families they are working with. They were there for us anytime, always approachable and compassionate, they truly are remarkable people and they lifted us up during some of the darkest moments.

Our family and friends were our rock, they sustained and loved us; Sent Daniel gifts and cards that meant more than they could ever have imagined. The other significant support people in our journey were the counselling staff at Peter Mac. From the time he was diagnosed Daniel was allocated a case worker from the team at onTrac@PeterMac Victorian Adolescent and Young Adult Service. She was amazing, there for him the whole way, even after he was transferred to the Austin. And she was available to Daniel’s brother and sister also. My husband and I were allocated a family counsellor. Even if we couldn’t get into the hospital to see them, we could phone or email any time and as often as we needed, sometimes daily when things were going really bad. After Daniel passed away they were still there for us. Without that support I don’t believe we would have coped. At first I didn’t really know what I would talk to her about or even if I wanted or needed to talk to her, but I went anyway and it was the best thing I ever did.

We are so grateful for the research that has taken place, that gave us hope and gave us time with Daniel, but so much more research is needed. I wonder if the people with the purse understand the true fiscal cost of Melanoma. Do they see the family and loved ones suffering and succumbing to a myriad of physical and emotional ills all requiring support from our health system? Or do they only see the part of the iceberg above the water.

Helen Roper

(Helen is a member of the Melbourne Melanoma Project Consumer Reference Group. She is committed to helping melanoma research progress so others families can benefit from it as well.)